Uterine Papillary Serous Carcinoma (UPSC): any others here???

Blondeandblue

lindaprocopio said:

Sad News
It is with great sadness that I make this post on behalf of my Mother, Linda Procopio. She passed away today after her long fight with Uterine Cancer. The Cancer Survivors Network Community provided Mom with wonderful support and my family is eternally grateful to you.

Mom was blessed to be surrounded by our family as she passed and knew how loved she was in this life.

Our family will keep each and every one of you in our prayers.

Dear Linda
You are still an inspiration. Over the past 3 years you helped more people dealing with UPSC than you know. So many read your updates and prayed for you over the years. Thank you for being an amazing and loving person. (((((((((( Linda )))))))))) Hugs to you.

Ladyebc

lindaprocopio said:

Sad News
It is with great sadness that I make this post on behalf of my Mother, Linda Procopio. She passed away today after her long fight with Uterine Cancer. The Cancer Survivors Network Community provided Mom with wonderful support and my family is eternally grateful to you.

Mom was blessed to be surrounded by our family as she passed and knew how loved she was in this life.

Our family will keep each and every one of you in our prayers.

So very sorry to learn that Linda has lost her well-fought fight with UPSC. My sincere condolences to the family that was so precious to her to all her online friends who she supported while they battled this terrible disease.

Ladyebc

lindaprocopio said:

Sad News
It is with great sadness that I make this post on behalf of my Mother, Linda Procopio. She passed away today after her long fight with Uterine Cancer. The Cancer Survivors Network Community provided Mom with wonderful support and my family is eternally grateful to you.

Mom was blessed to be surrounded by our family as she passed and knew how loved she was in this life.

Our family will keep each and every one of you in our prayers.

I am so sad to learn that Linda has lost her hard-fought fight against UPSC. I always hoped she would be, like me, one of the "lucky ones" who beat this cancer.

My sincerest condolences to the family that was so precious to her and to all her online friends who she supported as they battled this terrible disease.

Therev21

Newly Diagnosed
Just got the shocking news on Monday of UPSC and I am terrified! I have a PET scan tomorrow and surgery on 2/19. Won't know my stage until surgery.
Any words of encouragement would be greatly appreciated.

Rebecca

debrajo

Therev21 said:

Newly Diagnosed
Just got the shocking news on Monday of UPSC and I am terrified! I have a PET scan tomorrow and surgery on 2/19. Won't know my stage until surgery.
Any words of encouragement would be greatly appreciated.

Rebecca

Hi!  Sorry to meet this way,

Hi!  Sorry to meet this way, but soooo glad you found us so early.  I am UPSC also and I am 2 1/2 years out of treatment!  Don't freek out to much...the diagnosis is a lot to handle now.  DO NOT RESEARCH ON THE NET!  Old stuff and badly mis-information.  Some of the reports are 20 years old!   The UPSC is a bad type of cancer and is agressive, but after surgery I had the standard six rounds of Taxol and Carboplatin and five rounds of internal radiation.  It's hard, but so very doable!  Try not to stress(very bad) rest, take this in baby steps, breath, and smile!  We are here to help, there are several UPSC ladies here besides me.  Ask ANYTHING, there is nothing out of bounds.  I am up late every night if you want to talk,my internet is spotty, but I try to get on every day.  Don't expect the worse, there is life AFTER cancer!  Best, Debrajo

Ro10

Therev21 said:

Newly Diagnosed
Just got the shocking news on Monday of UPSC and I am terrified! I have a PET scan tomorrow and surgery on 2/19. Won't know my stage until surgery.
Any words of encouragement would be greatly appreciated.

Rebecca

Sorry you have you join us.  Wishing you well with your surgery and hoping that you have a low stage.  I too have UPSC.  Fell free to ask any questions you have.  Someone here probably had the same questions.  We all know what a shock it is to hear the word "cancer".   Hope your PET scan is negative.  In peace and caring. 

Therev21

debrajo said:

Hi!  Sorry to meet this way,

Hi!  Sorry to meet this way, but soooo glad you found us so early.  I am UPSC also and I am 2 1/2 years out of treatment!  Don't freek out to much...the diagnosis is a lot to handle now.  DO NOT RESEARCH ON THE NET!  Old stuff and badly mis-information.  Some of the reports are 20 years old!   The UPSC is a bad type of cancer and is agressive, but after surgery I had the standard six rounds of Taxol and Carboplatin and five rounds of internal radiation.  It's hard, but so very doable!  Try not to stress(very bad) rest, take this in baby steps, breath, and smile!  We are here to help, there are several UPSC ladies here besides me.  Ask ANYTHING, there is nothing out of bounds.  I am up late every night if you want to talk,my internet is spotty, but I try to get on every day.  Don't expect the worse, there is life AFTER cancer!  Best, Debrajo

Thanks!
DebraJo,

Thank you for your words of encouragement...it means so very much and it helps! Doc told me not to go on I Internet....which, of course, I did...big mistake! No further research on my part--planning to trust my oncologist and move forward.

Thanks again!

Therev21

Ro10 said:

Sorry you have you join us.  Wishing you well with your surgery and hoping that you have a low stage.  I too have UPSC.  Fell free to ask any questions you have.  Someone here probably had the same questions.  We all know what a shock it is to hear the word "cancer".   Hope your PET scan is negative.  In peace and caring. 

Thanks
Thank you so much for your words of encouragement! Means a lot!

Rebecca

forida

My mom just had her surgery

Hello everyone,

My mother was diagnosed with UPSC and underwent surgery 2 days ago. Her surgeon believes that the cancer was confined to a polyp but we won't be certain until after pathology. If the pathology report indeed indicates confinment, her surgeon is recommending just observation (no chemo or radiation). This is somewhat worrisome because from what I've read here and elsewhere (for example, Dr. Lu at MD Anderson), this cancer should be treated aggressively even at an early stage. In addition, we spoke to a surgeon at Sloan Kettering who is also advocating conservative post-op treatment for early stages. I don't understand why the discrepancies. My mom is 73 with no other major health issues. Perhaps it's her age?

Anyway, we're getting ahead of ourselves and should wait for the results from pathology. At that point we can discuss all this with her doctor. In the meantime, we're making arrangements to get additional opinions.

God bless.

 

sunflash

forida said:

My mom just had her surgery

Hello everyone,

My mother was diagnosed with UPSC and underwent surgery 2 days ago. Her surgeon believes that the cancer was confined to a polyp but we won't be certain until after pathology. If the pathology report indeed indicates confinment, her surgeon is recommending just observation (no chemo or radiation). This is somewhat worrisome because from what I've read here and elsewhere (for example, Dr. Lu at MD Anderson), this cancer should be treated aggressively even at an early stage. In addition, we spoke to a surgeon at Sloan Kettering who is also advocating conservative post-op treatment for early stages. I don't understand why the discrepancies. My mom is 73 with no other major health issues. Perhaps it's her age?

Anyway, we're getting ahead of ourselves and should wait for the results from pathology. At that point we can discuss all this with her doctor. In the meantime, we're making arrangements to get additional opinions.

God bless.

 

Forida,
I'm glad you're

Forida,

I'm glad you're seeking more opinions. I was diagnosed with UPSC which was also confined to a tiny polyp (less than 1/2 centimeter). My doctor who is located in Houston and worked in the past at MD Anderson said she would never recommend just observation for this aggressive cancer. I was treated with 6 rounds of chemo and had taxol/carboplatin which is standard treatment for this cancer. I would think that even at 73 if your mother has no other health issues she would be able to handle chemo just fine.

I do see a wide range of opinions on radiation, but chemo seems to be what most doctors recommend. This is my second cancer and I've had prior radiation so couldn't have been prescribed that, although my doctor told me she wouldn't have recommended radiation for me anyway. I've noticed that many doctors do prescribe radiation.

Please keep us posted as to what you decide to do......I know how difficult this is.

Sending hugs and prayers.........

 

Rewriter

forida said:

My mom just had her surgery

Hello everyone,

My mother was diagnosed with UPSC and underwent surgery 2 days ago. Her surgeon believes that the cancer was confined to a polyp but we won't be certain until after pathology. If the pathology report indeed indicates confinment, her surgeon is recommending just observation (no chemo or radiation). This is somewhat worrisome because from what I've read here and elsewhere (for example, Dr. Lu at MD Anderson), this cancer should be treated aggressively even at an early stage. In addition, we spoke to a surgeon at Sloan Kettering who is also advocating conservative post-op treatment for early stages. I don't understand why the discrepancies. My mom is 73 with no other major health issues. Perhaps it's her age?

Anyway, we're getting ahead of ourselves and should wait for the results from pathology. At that point we can discuss all this with her doctor. In the meantime, we're making arrangements to get additional opinions.

God bless.

 

Treatment for UPSC confined to a polyp

I, too, was diagnosed with Stage 1a UPSC carcinoma, confined to a polyp, and was given several choices of treatment: 6 rounds of carbo/taxol followed by several vaginal brachytherapy treatments (generally 3 treatments, but some radiologists break the dose into 5 treatments to further minimize side effects); chemotherapy alone, radiation alone, or observation. My gyne/oncologist strongly recommened choice #1; and based on what I had read, I agreed that I wanted to hit the cancer hard and fast and give myself the best chance of "cure."

In 2005, the Yale University School of Medicine completed a study that reviewed the effectiveness of platinum-based radiation and vaginal cuff radiation in the largest group of women with Stage 1 UPSC ever to be studied up to that point. These are the study results, taken from the second article listed below:

Stage IA patients with no residual uterine disease had no recurrences, regardless of adjuvant therapy (n = 12). Stage IA patients with residual uterine disease who were treated with platinum-based chemotherapy had no recurrences (n = 7). However, 6 of 14 (43%) stage IA patients with residual uterine disease who did not receive chemotherapy recurred. The 15 patients with stage IB UPSC who received platinum-based chemotherapy had no recurrences but 10 of the 13 (77%) stage IB patients who did not receive chemotherapy recurred. One of the 7 patients with stage IC UPSC who received platinum-based chemotherapy recurred and 4 of the 5 (80%) stage IC patients who did not receive chemotherapy recurred. Overall platinum-based chemotherapy was associated with improved disease-free survival (P < 0.01) and improved overall survival (P < 0.05) in patients with stage I UPSC. None of the 43 patients who received radiation to the vaginal cuff recurred locally, but 6 of the 31 (19%) patients who were not treated with vaginal radiation recurred at the cuff. 

MD Anderson also recommends adjuvant treatment for ALL patients diagnosed with UPSC unless the patient has medical issues that would make the risk greater than the benefit. The rationale is discussed in the first article listed below, an excerpt of which follows:

According to Dr. Lu, serous malignancies can be aggressive regardless of the amount of tumor present. "The recurrence risk and patterns are the main reason why we would be very nervous about recommending observation alone," she explained. "Even when there is no sign of invasion, we know that UPSC spreads in other ways and has a high recurrence reat." However, aded Dr. Ramondetta, "It's hard to tell a patient who has a disease confined to a polyp that she needs extensive treatment, especially if there is just a small percentage of serous histology present." 

I would suggest doing your research and then finding a gyne-oncologist whose treatment recommendations are in alignment with what you have decided is best.

 

http://www2.mdanderson.org/depts/oncolog/articles/10/4-5-aprmay/4-5-10-compass.html

http://www.ncbi.nlm.nih.gov/pubmed/16005947

 

Jill

 

cheerful

forida said:

My mom just had her surgery

Hello everyone,

My mother was diagnosed with UPSC and underwent surgery 2 days ago. Her surgeon believes that the cancer was confined to a polyp but we won't be certain until after pathology. If the pathology report indeed indicates confinment, her surgeon is recommending just observation (no chemo or radiation). This is somewhat worrisome because from what I've read here and elsewhere (for example, Dr. Lu at MD Anderson), this cancer should be treated aggressively even at an early stage. In addition, we spoke to a surgeon at Sloan Kettering who is also advocating conservative post-op treatment for early stages. I don't understand why the discrepancies. My mom is 73 with no other major health issues. Perhaps it's her age?

Anyway, we're getting ahead of ourselves and should wait for the results from pathology. At that point we can discuss all this with her doctor. In the meantime, we're making arrangements to get additional opinions.

God bless.

 

 

Hi Forida:

  I am responding to your e-mail regarding your Mother's UPSC - confined to a polyp.  I was diagnosed in February of 2011 (2 years ago) and my cancer was a large polyp - 5 centimeters.  My gyn/oncologist recommended very aggressive traetment consisting of 6 rounds of carboplatin/taxol and 3 rounds of radiation. He also recommended surgery in between to remove my omentum and check my lymph nodes.  I did have the 6 rounds of Carboplatin/Taxol and the 3 rounds of radiation, but I was very weak after 3 rounds of chemo to have gone through more surgery for the omentum and the lymph nodes so I decided not to have the additional surgery for the omentum and lymph nodes. I know just about most women have the omentum and lymph nodes removed - and I did not. My oncologist did say that if any of my lymph nodes had lit up the first few months after chemo, then he definitely would have recommended me having the surgery, but they did not so I did not have this additional surgery done inbetween. I have been having cat scans every 6 months except for the first year (I had 3 cat scans the first year) and so far, I am disease free with No evidence of cancer - for which I am very grateful and thankful.  My oncologist recommended very aggressive chemo treatment for me even though I just had a large polyp.   Actually, my gynecologist did my surgery and did not know at the time that I had cancer and then after I had my hysterectomy, my gyn introduced me to the gyn/oncologist. My gyn has known the oncologist for many years.

   After I was diagnosed with UPSC a couple of weeks in the latter part of February, I went home and looked up UPSC on the Internet and read that without getting chemo you have over a 40% chance of reoccurring.  I knew I definitely wanted to have the chemo and radiation done even when I was in his office as this is a really aggressive cancer.  To me, if you don't have the chemo and radiation, you are playing russian roulette with your life and are taking a huge gamble of whether or not the cancer will return.  I figured yes, I would lose my hair, but it would always grow back again and it was only temporary.  I immediately went out and looked for a wig and bought one a few weeks later and it looked so very natural.  Some people did not even realize I was wearing a wig as it looked very natural. My hair now has come back and looks great although the texture is not the same, but it still looks really good.  To me, I wanted to live and enjoy life and do everything I could to survive this cancer. My oncologist did tell me in the beginning that I would survive the cancer based on the histology of the cells, my age being 59 at the time and my good medical history so that was a very big relief and comfort to me knowing this.  I have since my diagnosis changed a lot of my eating habits for the better and am eating a lot healthier.

  I would not hesitate for a moment to have the chemo and radiation done. It will save your mother's life and the cancer most likely from reoccurring providing she has the chemo and radiation done.

  My oncologist is in the Phila. suburbs and has many years of experience and is one of the top oncologists in the country.  

  Anyway, your mother should be able to go through the chemo as it is doable.  I had very minimal problems with chemo although I did have constipation and could not eat for a few days afterwards and after about 5 treatments, I did have to have a transfusion and Neulasta shot as my platelets were really low and after the shot and transfusion, I felt a lot better and it did really help me feel stronger.

  I wish your Mom all the best and hopefully she will decide to go through chemo and radiation  Keep the ladies here posted.

All the Best,

Cheerful

 

   

 

 

 

forida

forida said:

My mom just had her surgery

Hello everyone,

My mother was diagnosed with UPSC and underwent surgery 2 days ago. Her surgeon believes that the cancer was confined to a polyp but we won't be certain until after pathology. If the pathology report indeed indicates confinment, her surgeon is recommending just observation (no chemo or radiation). This is somewhat worrisome because from what I've read here and elsewhere (for example, Dr. Lu at MD Anderson), this cancer should be treated aggressively even at an early stage. In addition, we spoke to a surgeon at Sloan Kettering who is also advocating conservative post-op treatment for early stages. I don't understand why the discrepancies. My mom is 73 with no other major health issues. Perhaps it's her age?

Anyway, we're getting ahead of ourselves and should wait for the results from pathology. At that point we can discuss all this with her doctor. In the meantime, we're making arrangements to get additional opinions.

God bless.

 

Thank you all for your kind

Thank you all for your kind words and advice. The pathology lab estimates that they will have a report in 4 days. I'm requesting an appointment from MSK today. Is the best way to do this through their referral system or should I be researching specific doctors?

 

Therev21

PET Scan

Just wanted to share that I got my PET results today and it shows no metastisis!  Surgery scheduled for 2/19---I am believing this is a very good sign that we have caught it early.

Rebecca

GabbyMaude

Surviving UPSC

Hi friend - I was diagnosed with stage IV UPSC 3.5 years ago.  I have had 18 months of chemo and 45 radiation treatments.  I am currently in a clinical trial as I have a thrid recurrence.  The good news is that I am doing okay, still working full time and able to handle the treatment.  It's so important to stay as positive as possible, and to live each day to the fullest.  Friends, activities, artwork, church - these are all things that have helped me.  I talk to my cancer (your lease is up!  I want to evict you!!!)  I also keep a blog to communicate with friends and relatives not close by - my blog is www.Apopsal.blogspot.com.  Let me know if you need any other thought or suggestions.  My thoughts and meditations are with you!!

.  

elpasorudy

GabbyMaude said:

Surviving UPSC

Hi friend - I was diagnosed with stage IV UPSC 3.5 years ago.  I have had 18 months of chemo and 45 radiation treatments.  I am currently in a clinical trial as I have a thrid recurrence.  The good news is that I am doing okay, still working full time and able to handle the treatment.  It's so important to stay as positive as possible, and to live each day to the fullest.  Friends, activities, artwork, church - these are all things that have helped me.  I talk to my cancer (your lease is up!  I want to evict you!!!)  I also keep a blog to communicate with friends and relatives not close by - my blog is www.Apopsal.blogspot.com.  Let me know if you need any other thought or suggestions.  My thoughts and meditations are with you!!

.  

Treatment

Good luck with the clinical trial. Where can I find information about it? - Rudy

Randumgrly

Momismyhero said:

My Mother
My mother was diagnosed with papillary serous carcinoma, stage 4c. I have read so many postings that begin with that sentence that it tears out a tiny piece of my heart each time I read a new one.
My 69 year old mother is coming home from the hospital tomorrow, after having a radical hysterectomy appendectomy, and removal of a tumor from the omentum. Her gyn/oncologist has said that its spreading, and that chemo will give her maybe a few more months. She will not agree to chemotherapy to gain just a few months more that will be spent ill, and in bed.
She has decided to use naturalpathy, homeopathy, and essiak tea.
Have any of you ladies treated yourselves with these things instead of chemo? If so, how have they worked for you? Are there other things to try?
I want to help her in any way I can. She is determined in her decision, and I support her wishes fully, even though its hard to imagine life without her. I know her strength and faith will see her thru this. I appreciate any advice you have to offer.
Thanks,
Cari

My mother

Cari, my mother too has stage 4. We just returned home from her surgery. I am so saddened bc the doctors are beating around the bush with her about her prognosis, and it is breaking my heart. I had to ask the aweful questions bc they wouldn't flat out tell me. I would like to know is your mom still with you now?

MTheresa

Therev21 said:

Newly Diagnosed
Just got the shocking news on Monday of UPSC and I am terrified! I have a PET scan tomorrow and surgery on 2/19. Won't know my stage until surgery.
Any words of encouragement would be greatly appreciated.

Rebecca

UPSC

I'm new to this, too.  I had my surgery 2/7/13 and was fortunate to have stage I, if you can call any of it fortunate!  I had been spotting since April of 2012 and trying to find out the cause.  They kept thinking it was fibroids that were leaking because all of my tests came back negative until an endometrial biopsy January 2013.  Very scary.  I start treatment around the 1st of April when I'm healed from the surgery.  I'll be praying for you.  Everyone I know and love has been praying for me and I believe it has helped.  I hope you have good people around you, Rebecca.

NoTimeForCancer

forida said:

My mom just had her surgery

Hello everyone,

My mother was diagnosed with UPSC and underwent surgery 2 days ago. Her surgeon believes that the cancer was confined to a polyp but we won't be certain until after pathology. If the pathology report indeed indicates confinment, her surgeon is recommending just observation (no chemo or radiation). This is somewhat worrisome because from what I've read here and elsewhere (for example, Dr. Lu at MD Anderson), this cancer should be treated aggressively even at an early stage. In addition, we spoke to a surgeon at Sloan Kettering who is also advocating conservative post-op treatment for early stages. I don't understand why the discrepancies. My mom is 73 with no other major health issues. Perhaps it's her age?

Anyway, we're getting ahead of ourselves and should wait for the results from pathology. At that point we can discuss all this with her doctor. In the meantime, we're making arrangements to get additional opinions.

God bless.

 

Get a second opinion

Dear Florida,

While my UPSC was luckily caught early, stage 1A, and I had hoped that since it was early that I wouldn't have to have the chemo/radiation/chemo sandwich, I did.  Looking back and not knowing anything about cancer I am so happy I did!! 

While I was VERY fortunate to have mild side effects, my radiologist even said to me, "you don't understand, people don't do as well as you did", I know it is what I had to do to beat this evil, beast down. Yes, I did lose my hair and my friends and I all cried when it got shaved, and then I took a picture, bald, surrounded by bald men I work with. 

I can't wait to participate in the National Race to End Women's Cancer in DC this November and meet some of the sisters who have battled this disease like me. http://www.foundationforwomenscancer.org

 

"Never, ever, ever, ever, ever, ever, ever, give up."  - Winston Churchill

Good luck and God bless.

NoTimeForCancer

forida said:

Thank you all for your kind

Thank you all for your kind words and advice. The pathology lab estimates that they will have a report in 4 days. I'm requesting an appointment from MSK today. Is the best way to do this through their referral system or should I be researching specific doctors?

 

Gycecological Oncologist

Sorry Florida, I saw your questions after I posted.  You want a Gynecological Oncologist!!  I never thought I would have one of these but now I do!  I still can't wrap my head around it somedays, but I will talk to anyone anytime about this. 

I was diagnosed April 2012, 10 days after I buried my father.  2012 was not a good year for me or my family but I am BLESSED with fantastic friends and learned what FAITH is all about.  I finished my last chemo in December and am growing my hair, and more exciting, my EYELASHES back!